About a month ago, I had a televisit with my neurologist who after hearing my struggles with staying "on" during the day, added COMTAN to my cocktail of drugs in hope that it would extend the "on" period of the Carb/Levo tablets. We started out with only one Comtan (Entacapone) per day. It worked so well, I almost felt normal again. I was so excited I hoped that Dr. Aragon would increase it to last all day. He did. He instructed me to add one 200 mg tab to each dose so I went from 1 tab to 4 per day adding yet ANOTHER dopamine agonist to the two others I am taking.
To no one's surprise, it only took 2 1/4 weeks of 4 per day to put me in a psychotic state with a disappearing memory. It felt very strange to be alert and aware of the changes. It was in slow motion coming on stronger each day until I had a break on a Saturday night when i took myself off of it when I became afraid to leave the house. I immediately called my neuro's office to schedule a follow up televisit to discuss.
He basically said, "Its time to consider DBS brain surgery. You are already at doses that are too high and nothing we try is working." "You are cooked," is what he told me as he handed me a prescription for DBS evaluation back with the University of Miami team (where I started out in January 2015). I am happily returning to the care of Dr. Carlos Singer (head of movement disorder neurology) and very experienced and acclaimed DBS surgeon, Dr. Luca. Dr. Aragon assures me, I should get approval this time. My televisit is scheduled for this Thursday, August 27th.
In the meantime, I introduced him to my rescue drug - Kynmobi, a listerine type strip that goes under your tongue and snaps you back "on" in a matter of minutes. I personally love this drug and use it as my rescue. It does not build up like Comtan; it assimilates the dopamine so it works faster and its more stable. It also stops my very painful cervical dystonia in its tracks. Unlike Comtan, I can take this up to 5 times per day and remain sane with no side effects. Perfect for me because I'm topped out at the number of drugs i can safely take, but they have become a problem because that max is not working. The current regiment of sinimet, amantadine, two Neupro 8mg patches, gabapentin, clonazepam and propranolol; has me "off" more often than "on". Kynmobi is my only resort that still works and brings me fully "on". I am using the extra clinical trial tabs that I've kept cool and dry. When the strips are introduced to national pharmacies. I will get a script and use this until surgery. Thank God I still have a med that does the trick.
I will let you know if I get approved and moving forward to a surgical date. Stay tuned.
PS: Go to www.InkForPD.com today to support PD research funding. Thank you.
Rob asked me this year, 'what do you want for your birthday? I answered and he said. "you want to do what?" "Yes." I said enthusiastically. When will we EVER get a chance in the future to go to Magic Kingdom with the park filled to a mere 10% of normal average day capacity? There are no lines. The. longest we had to wait was 20 minutes. We finished each park in an unprecedented half-day. We also seized the opportunity to stay on-property as a Florida Resident at Saratoga Springs in a premium one-bedroom villa for $250 per night (regularly $500+ per might.) First floor close to transportation and across the bay from Disney Springs, where I savored Lobster for dinner at The Boat House in thee Trophy Room on Saturday night.
I was in the lap of luxury with a full kitchen, in suite laundry, a giant deep tub I loved drowning in each night we were there, 710 sf of space, a balcony terrace, huge grotto pools with pig pong & fooseball, and on-site luxury spa. Heavenly.
The front desk placed a "Happy Birthday Lisa button on my shirt placket and I received about 100 wishes from random strangers. That was a surprise & delight.
We enjoyed an unforgettable three days and two nights in a Disney resort room, played with all the amenities, ate including a birthday dinner and four 3-day park passes for less than $1500. If you are a Floridian reading this. It is a MUST DO while COVID is still affecting the scale back. Fall in love with your favorite Disney characters again!!!
Have fun and Be Well,
If you have Parkinson's Disease or know or love someone who does or you are a caregiver for a PD patient, you can help us win our fight to stop PD in its tracks. The researchers have already found their biomarker target and the substance that is eating away at our brain cells thanks to the MJFF. Now it's the #RaceToACure for researchers. What do we need to get there? More funding. Especially in today's economic climate it will take a village of grassroots efforts that all add up together to make this happen.
I have been gifted a little help from the Universe and my job is to send it around the world. Please add this to your checklist for or to include in your next fundraiser, especially if you are a PD Fundraising Organization, Event Planner, or Support Group. No need to create your own item to sell. And you can easily add this to any participant or Sponsor sign up kit for participants in any capacity to wear or gift. It a path directly to the PD Researcher's door. $5 at a time.......... Cut and paste and pass it on!!!
Our Million Dollar Fundraising Campaign is called, "Ink for PD" at www.InkForPD.com
Ever Dream BIG? Really BIG? Never give up. Ink For PD is a new campaign in collaboration with Conscious Ink to raise funds specifically for Parkinson's Disease research through the sale of Special Edition curated sets of high-quality, positive affirmation temporary tattoos.
Conscious Ink Manifestation Temporary Tattoos feature over 500 positive words, inspiring quotes, healing affirmations and empowering invitations. Even at the most basic level, these messages can have a profound effect on us by simply reminding us of our intentions as we go about our day. Not to mention how they may impact those fortunate enough to get a glimpse of your provocative ink and its message. Perhaps, gifting them with the exact sign they need in that exact moment!
There are two series packets: Patient and Caregiver/Supporter. Both work for anyone, even if you are neither. What makes these extra special is two custom created PD Tulip Symbol full color tattoos in each packet. If you are going to be in an event walk or run or bike or any PD gathering, wear it proudly as you support research for the cure.
$5 from every packet sold goes directly to researchers - no admin fees, no costs. Dollar-for-dollar. If we sell one million packets that is $5 million for research. I think we can get there with 10 million documented PD patients worldwide plus their friends and families. You don't have to do anything. Conscious Ink will do all the work. You just have to check it out, buy a packet or two and help spread the word. It's that simple.
1. Go to www.inkforpd.com #inkforpd
2. Buy a packet - $5 donated; buy both and $10 donated to a PD Researcher to #RaceToACure
3. Post in your social media or at work. Pay it forward. Pass it on.
That's my mission. I happen to dream big. Will you help make one footstep forward? That's all it takes. Thank you for your support.
For those who dream BIG (like me), here is someone who didn't wait for his future to slowly & progressively rob him of his faculties. He dreamed big, took the first step and then the next. Because he didn't stop, he began steering not only his, but the entire PD community's future. The Michael J. Fox Foundation for Parkinson's Research was born in 2000. None of us with the disease today would look anything like we do because of his success in bringing PD to the front page with his celebrity status and early diagnosis.
Prior to MJFF, if you were diagnosed with Parkinson's Disease you were given Carbidopa/Levodopa, the gold standard pill. That's about all they had. DBS was still early. There were other drugs but those were accidental finds when treating for something else.
MJFF did the incredible. The Foundation FUNDED PD researchers so that the smartest of the brilliant could actually do their jobs and how lucky we all are. He didn't just speed up the process - it went WARP SPEED. The result: New drugs and new therapies funded, clinically trialed, passed and produced for the entire range of symptoms this bizarre disease carries with it. DNA research to identify potential biomarkers led to finding alpha-synuclein acid eating my dopamine transmitter cells and the biomarker LRRK2 connection. Researchers now have a target !! The problem was and still is the blood/brain barrier hurdle that keeps us alive but limits doctors access to reach it beyond scan for answers, unless its a brain in autopsy.
No two PDers are alike. No disease is quite like PD. No one, in my experience, has only PD. I have PD, Dystonia, Dyskinesia, and a host of other disorders (all related). Patients affect can be almost unnoticeable to incapacitated. And it suffers from too high a rate of misdiagnosis as something else because it is showing up earlier and earlier in younger and younger patients.
Michael J Fox is a personal hero of mine. Thank Michael for leading the way to ending this for our children's children.
What if you knew you couldn't fail? What could you do if you dream big dreams and never give up or give in?
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"Lisa Chalker is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."